Letter From Healthy Me

Dear Sick Me,

There is an end to this. I know you’re tired and your lips are so chapped from treatment that they are basically falling off and that’s just one of ten things you are frustrated about, but just listen. Actually, the ringing in your ears is beyond deafening so just read. I know you have been ill for a long time. I know you are not your best self. I know how much of an identify shift this has forced upon you. But, believe me, your illness has an expiration date.

You know those first daily intimations of your illness that occur before your eyes have fully opened for the day? The ones that wake with you as you lay in your bed while you lay mildly aware of that beautiful hazy light of a sun not fully risen? You know how before you’ve even completed the disjointed and random dreams marking a restless and shallow sleep you are aware of intense pain in your body? And most of all, you know how once your body does realize it’s waking, it aggressively slingshots the process and your heart begins to pound and you are wracked with internal vibrating like a door stop that’s been bent back and released? There will come a day that will stop. You will get the chance to again fully appreciate the beauty of a morning. There will come a day when you can wake and stretch and bask in the comfort of your sheets and be unaware of your body except as a thing to jump up and seize the day with. There will.

There will come a time where getting out of bed doesn’t lead you hobbling straight to your pill cabinet. Where taking four different medications simply to try to calm your nervous system to a tolerable level won’t be your first urgent thought of the day. There will come a time when you can wake, walk past your stored empty pill case and eat Frosted Mini Wheats while looking out your window over the beautiful scenery. You’ll have no other thoughts but simple things like how you sure do love Frosted Mini Wheats and how majestic mountains are casting shadows with their crags. You will.

A day will come where you won’t look in the mirror and see dark circles under your eyes and a face you hardly recognize. You won’t see the stresses of prolonged internal battles with infectious agents written over your visage. You won’t constantly battle painful sores or hair loss or bizarre flaky redness over your eyelids that just won’t go away. You won’t see the daily reminders of feeling too sick to shower as you attempt to put back your greasy and unkempt hair that has seen better days and better hairstyles. You won’t feel the frustration of your illness forbidding you to hide it because your foundation flakes on your dry and sallow skin, your concealer is a joke, you can’t put anything on your eyes and your lipstick just draws attention to that weird sore right on your top lip line. Yes, I promise you, your hair will grow shiny and bouncy again. Your eyes will sparkle and your skin will pep. You won’t even need concealer again… remember those days? They will come back.

I know you hate meal time. You have for quite some time now. I know you’ve long grown bored with the limited foods you can eat. I know how much you miss the freedom of grabbing on occasional donut or baking a batch of cookies with no thought at all to consequences. I know how maddening it is that a few bites of something outside of your diet has fairly immediate consequences and you’re tired of experiencing the tachycardia for hours or body aches for days. I know it still feels like your body continues to react to more and more foods and your list continues to grow shorter. But this won’t last forever. You will once again enjoy a family BBQ for more than the social aspect. You’ll even be able to eat pizza again. Doesn’t pizza sound amazing? It’s not even 8 AM and pizza sounds amazing right now to you. I can feel it with my healthy me special senses from the future. Sick me, some day, you will eat pizza before 8 am again, with no reservations. Again, you’ll do so while you look out your window at mountains and be able to think about how gosh darn lovely mountains are because your heart isn’t pounding hard enough to have hi-jacked every ounce of your attention. Unsweetened breakfast shakes, which I know sometimes you feel is the equivalent of IV TPN will not live immortally on your breakfast menu. You will see.

There will come a time where you aren’t scheduling your morning, afternoon, and evening around handfuls of antibiotics and a pill case large enough that surely was designed for someone far beyond your years. Soon you won’t be spending Sunday mornings filling each slot – morning, lunch, dinner, and bed – with pills and supplements, often to over capacity. Soon your pharmacy will forget your name and you will forget the faces of the techs there. Soon your online shopping will shift from vitacost and seekinghealth and the amazon health & wellness section to things you actually want. Maybe clothes that can replace old ones because the last time you shopped was years ago and think of how great it will feel to buy a shirt that’s actually in style now and you actually have a place to wear it to. You’ll have that chance, you will.

Someday soon, you will have a day to seize. You won’t have it dictated for you by a disease that likes to remind you every moment it is still there. I know you can’t sleep without symptoms, eat without them, shower without them, even talk without them. I know that every moment of the day you are feeling your disease and I know every moment of the night is dictated by bacteria that seem to rule over even your subconscious. I know it is much that you feel inside that exists without awareness of others. Sometimes there is much you feel that you can not hide. I know that loud noises send you crumbling to the floor and I know that flashing lights have you scrambling to do anything that will block the lacerating waves these inflict upon your brain. I know these are seizure triggers and I know you move throughout your day fragile and vulnerable to many other triggers too. I know each day feels like a landmine and I know this forces your constant attention. I know how much it requires of you to keep it together at a restaurant when you can hear plates clanging in the kitchen, every conversation at all surrounding tables, every baby that is fussing and every chair that drags across the floor as one gets up from his table. I know the anxiety this causes and I know few understand the vexatious discomfort of sensory overload. I know how hard you work when you have to feverishly stifle these things in order to engage in something “normal”. I know most don’t understand much of your symptoms and thus burdening you with the weight of this arduous existence alone and in your head. I know this has become your way of life – a poorly arranged marriage to a tyrant from which you feel you can’t escape. But someday it won’t. There are movie theaters and dinner parties and even unexpected car horns or a dropped plate in your future that won’t phase you a bit. There are days ahead where disease-borne oppressions do not rule. There are.

You know how you spend a lot of time experiencing some kind of pain? You know how right now your back is hurting and you can’t seem to shake the upper right quadrant abdominal pain that’s been an ongoing trouble for years? You know how sometimes your wrist can flare out of the blue and you can’t even dress yourself due to the pain? Or you know how your gut will suddenly hurt so severely, enough to have you double over and yell? You know how your ribs feel like you’ve been kicked by a horse almost every single day? This pain is not in perpetuity. Your body will be freed from this. You will soon be able to move freely and even curl up in bed or on the couch in front of a movie without having to split your attention between the screen and your distress. You’ll do these things without even a fleeting thought of physical discomfort. The enjoyments of the world will be yours.

Someday you won’t be plagued by the susceptibilities of your heart. I know how for over two years you have felt every beat. I know your heart is constantly in some level of your awareness through no desire of your own. I know you feel it beat in your chest, in your neck, in your head, in your ear, in various parts of your body when you lie down and even in your eyes at times. I know how much of a discomfort this has been. I know you’ve forgotten what it feels like to NOT feel your heart, to go through your day unaware of it’s beating. This will not last forever. Someday, you’ll know. Eventually you will be able to drink a glass of water without feeling it skip a beat. You will be able to eat without it resulting in chest pounding for hours. You will once again run without triggering arrhythmia and you will be able to resume your love for yoga and weightlifting without feeling dizzy, woozy, and faint. It doesn’t seem like it now, but this cardiac clamor will go. You will get your heart back. You will.

Someday, sick Me, and someday soon, the chains of this disease will be loosed. Someday you will discover that your body is once again yours. That each day is once again yours. That you are free to do and go and be, more fully.

Someday your doctor will give you the go ahead to become a mother. He will declare your body a vessel safe to house life without risk of giving your child this disease. You will get that chance to take care of others, as they have taken care of you. You will get that chance to repay humanity for kindnesses shown to you.

Someday you will look in the mirror as you brush your teeth, or maybe after washing your face, and you will see remnants of a war in your eyes, but a war that is over. You know in years past you’ve struggled to love that image or see her worth, and I know during your illness you’ve struggled to even recognize her. But soon you will know her. Know her because you’ve learned a bit more of what she’s made of and from whom she is made.

You will have great compassion for her because you will know your Father in Heaven’s compassion for her. You will love her. You won’t love her with egotism but with truth. And I know that many times throughout your illness you hung on to the belief you surely weren’t forgotten despite the prolonged and drawn out era of your discomfort. Your belief will be knowledge. You will know God doesn’t leave us in our agonies forever.

Someday this storm will be over. You may not know exactly when that happens, as it won’t happen in a day. And I can assure you that you won’t remember how you made it through. But you will know that one thing is certain. When you do come out of this storm, you won’t be the same person who walked in. You will look back on this time and be able to discern it with greater wisdom than you currently have now. You will see it as some sort of school. Yes, it was schooling all along. You will remember periods of it where you recall barely staying above water. Others where you were quite strong and endured gracefully. And others… not so much. You’ll see moments where you cried with fists in the air to a God who seemed silent while a surge in the storm raged. But in the full spectrum of the experience, you will see He never left. Instead, perhaps like a great teacher does, He remained silent during a test or two (or more). You will see this was for your good. You will appreciate it.

Dear sick me, be patient. There was a better you to be built. Flaws are woven through the fibers of every mortal being, and you were never exempt. God gives you opportunities disguised as bad luck at times, opportunities to overcome those flaws and grow more refined. You wanted those opportunities, you were born for that. You know, sick me, how your basement had this unknown flaw behind its walls and then it flooded and grew mold and created a big hassle for everyone? You know how parts of it have had to be stripped to the foundation and studs in order to fix it? You illness is doing the same. It’s a painful process and a slow one. You may not be whole now, but someday you will be. You will be. You’ll see how much better you were rebuilt. You’re becoming acquainted with parts of you that disease can not touch. You are growing those parts. Your health will return and you will live a good life, and the cultivation you’re doing of what death and illness can not touch will last with you eternally. This journey won’t be for naught.

You will look back and ponder it often. You will ponder it in camping tents under bright moons as wind blows through trees. You will ponder it as you rock your babies while that hazy morning sun you used to be only barely aware of now pours across their blankets with great warmth. You will ponder it in plane rides as you fly to far away bucket-list destinations. You will ponder it as you feel the wind in your hair while biking mountain trails over-looking valleys lived in below. Even if you aren’t pondering it directly, it will be an experience always with you… each piece a part of your new frame.

I love reading this. I read it often. Thank you for the uplifting message ❤ I was recently diagnosed with Lyme. I was bitten in the middle of June this year 2015 and started antibiotic treatment at the end of July. I actually take my last dose of antibiotics tomorrow! I'm following up with holistic treatments. I don't know if you can share here, or if you can email me personally, but I'm curious what treatments you've undergone or are still doing. My email is goldygirl2332@yahoo.com

This was an awesome article. I really needed it and appreciate your sharing of it! It literally sounds like a note to self and all the little conversations I have in my head that it won’t always be like this, this isn’t going to last forever…

Reblogged this on Lyme and a Coconut and commented:
This. Is. Phenomenal. I wish it would go viral because every chronically ill person needs to read it. You’ll nod, you’ll probably like cry like I did. This could be me. This could be so many of my loved ones who are sick. Thank you to the author who wrote it! I plan on reading and following her blog!! I hope you do too.

Thank you for this! I never (and I mean never) write comments but I just wanted you to know how greatly your words have touched my heart. At a particularly hopeless time during my treatment, I needed to read this! I needed a reminder. I have never related more to the words of another person – it was as if you you could read my mind.

It sometimes feels as though this disease has stolen everything and has turned me into a shell of who I once was. But you are right, and I needed to hear it: “This journey won’t be for naught.” What a beautiful reminder! Thank you, thank you, thank you. God bless and a speedy and complete recovery to you. I just know you will have your cake and be able to eat it too – sooner than you think!

This is all about my daughter who is fighting for her life. She has been suicidal and without hope with only me and her dad holding on for her. Thank you for writing this and making it public so that we can learn more of the inside suffering that we can only imagine.

My daughter Diane has had this disease since she was a child and suffered greatly until just three years ago they finally diagnosed her and now she is 67. Thirty years ago she came down with double vision and now they know it was from Lyme.I’ve been on TV telling what a terrible disease you can get from a tiny tick bite.Could some one send me her email as I would like to give her hope and let her know that someone cares. My name is Chuck Drinkwater and my email 2 gemstone@comcast.net. The reason it says gemstone is because I was a jeweler for forty years ending up with three Jewelry stores. In His Servive, Chuck

Chuck, I was a little confused about you message, but I think if you were needing my email (I’m the author of this post) you can reach my through my contact me tab on the left. However, thank you so much for your care and concern. My whole purpose behind this post was to also spread hope, as I know there is every reason to hope. Thank you again.

Thank you so much for this. You put into words how I have been feeling my whole life and I can’t thank you enough for reminding me that I’m not alone. You also reminded me to be kinder to myself and to not beat myself up because I haven’t been able to do all the things I want to do in my life. And that I need to keep fighting for myself💗

Sometimes it can be difficult to put the pain into words but you expressed it so beautifully! We are definitely singing the same song. Thank you for sharing your light Tara, you’ve helped me shine a little brighter today! ♡

Beautifully written Tara, reminds me so much of when my wife (Marge from the first comment) was going through this horrendous experience (13 years undiagnosed). As I always told her, you’re one treatment session away from beating this. All it takes is one little miracle. And miracles do happen… they did in my wife’s case at least. After more than a year in bed and unable to take care of herself, we’re finally out of this hell, and although not all is perfect, we did travel again, we did hike again, we did yoga together again. And so will you.

After this there is no stopping you, and you already know this. Ex-Lymies will one day rule the world!

Tara, you mention in this post that you had mold in your walls. Do you think it might have aggravated/sparked your condition? You probably already know this, but mold toxicity has horrendous effects on the CNS, similar to LD.

It caused a flare for a week or so but we’ve got it under control and I’m feeling back to my normal self for the most part. After almost a year of IV treatment (and many of my own miracles) I’m well on my way to recovery… Just getting rid of those remaining symptoms is taking about as equally long! Thanks for the comment!

Thanks for the reminder that my 12 year old daughter will get well and will hopefully be able to eat junk food (sometimes) and go to sleepovers and to summer camp and to amusement parks without dragging along a cooler of foods she can eat and pills she must swallow. Thank you for he reminder of why we fight his awful disease every single day even when it feels hopeless.

I so understand. Your letter moved me. I succeeded in reversing RA quickly because I didn’t have it for even a year when I started seeing a functional medicine doc in 2012, but the MS with me since 1991 (and before) is truly a struggle. I’m now past the point of sitting at the breakfast table, collapsed, head on table, and moaning how awful I feel. I am steadily improving, but it’s a tough road. I, too, will one day look back after the struggle has ended and ponder the days when I was SO UNWELL. There are others of us out here who understand. Really.

You, as well, Tara. Right now my life is filled with “all the things I need to do” in order to get better (estim, exercise, meditation,bone broth, etc) not to mention all the supplements, treating SIBO, dysbiosis, yeast blah, blah… but I continue to improve albeit slowly. We will persevere!